AML, age 78, taking Decetabine/ Venetoclax, no transplant

Posted by lindagi @lindagi, Jun 30, 2023

I am a 78 yrs old with AML and opted not to have a bone marrow transplant due to my age. I have been in remission for 16 months thanks to regular cycles of Decetabine (infused, brand name Dacagen) and Venetoclax (orally, brand name Venclexta ). Anyone else on the same regime? Would love to hear your experiences and share mine.

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timt347 | @timt347 | Mar 2 7:14am

In reply to @dmc1937 "I am starting ara-c with Venclexta Monday. Treatment requires shot of ara-c twice a day with..." + (show)

In addition to side effects, I think I should mention the intended effects. I started ara-c and Venetoclax because I had a relapse of AML. The relapse was in the form of AML cells in the prostate. After getting the ara-c /Venetoclax combination, the volume of my prostate shrank by a factor of five. A recent PET scan did not find any problem. These two drugs were a spectacular success for me.

Regarding transportation, which is always a problem for me, maybe the clinic would have some information about options. A few times I have taken lyft.

dmc1937 | @dmc1937 | Mar 2 9:29am

Thanks for the update. I am on the wait list for an opening at the HHH house at Mayo but no openings so far. Hotels are out of the question, partly because with spring training they are all full, also prohibitily expensive. I couldn't find an Airbnb that I felt comfortable with. Fortunately I have family help so the driving is manageable. Congratulations on your success with treatment!

5qdeletion | @5qdeletion | Mar 11 12:45pm

In reply to @dmc1937 "Thanks for the update. I am on the wait list for an opening at the HHH..." + (show)

Have you explored the possibility of having Mayo Clinic allow a local oncologist to administer these?

My husband's hematologist is at Mayo, and his oncologist is just a few miles away. Husband was diagnosed by the oncologist with AML two weeks ago; and the hematologist appointment to discuss options is two weeks away. We are three hours from Mayo.

dmc1937 | @dmc1937 | Mar 11 2:00pm

No, haven't, didn't think that was very likely. Good luck on getting into HHH.

5qdeletion | @5qdeletion | Mar 11 3:51pm

In reply to @dmc1937 "No, haven't, didn't think that was very likely. Good luck on getting into HHH." + (show)

Are you a Mayo Jacksonville patient? For that HHH. Thanks!

dmc1937 | @dmc1937 | Mar 11 4:09pm

Phoenix

snakebite | @snakebite | Mar 12 7:47am

I've had similar success with my MDS and MF. After years of decline I had a long session of both Dacogen and Vonjo I'm in better shape than I have been in 10 yrs. Hgb has come up from 7-8 and has been 12 for the past 9 mo. I've had no Blood Transfusions for almost 10 mo and I was down to getting them every 1-2 weeks.

5qdeletion | @5qdeletion | Mar 12 5:15pm

In reply to @dmc1937 "Phoenix" + (show)

Oh, thanks. We are Jacksonville. Best of good fortune on your wait list. These things are so very important.

5qdeletion | @5qdeletion | Mar 12 5:22pm

In reply to @snakebite "I've had similar success with my MDS and MF. After years of decline I had a..." + (show)

Snakebite, are you saying Dacogen and Vonjo are used for your MDS and MF.... or are those for AML leukemia?
Thank you so much!

snakebite | @snakebite | Mar 12 7:25pm

In reply to @5qdeletion "Snakebite, are you saying Dacogen and Vonjo are used for your MDS and MF.... or are..." + (show)

MDS & MF

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